Want to Run the ING NYC Marathon? NFE Has Only Eight More Spots!

Our top five reasons to run NYC with NFE:

5. It’s a premier race. Where else can you run in the same event as Super Bowl Champion Amani Toomer and other sports elite athletes?
4. Sightseeing Galore. Spanning all five boroughs, the marathon course will take you across five bridges, through cultural neighborhoods and Central Park.
3. Great Music. If the cheers from the sidelines aren’t enough, enjoy more than 100 live bands stationed at regular intervals to motivate you to the next mile. From kilted men holding bagpipes to funky sidewalk bands, there will be live entertainment from start to finish.
2. NFE Family Support. Our staff and team provide support and advice all along the course. In September, NFE will have weekend training runs through Central Park to help for the big day. And, if you don’t live in NYC, take advantage of our online training plans. You can also get personalized training advice from our certified coaches.
1. NF Heroes. Training is tough and some days you probably wonder, why would I ever want to do this? Children and adults with NF have to keep pressing on even on through MRIs, doctor appointments, feeding tubes and other complications of NF. NFE can match you with an NF Hero and you can even meet some of them at our team pasta dinner. Be inspired by knowing that because you have chosen to RuNFor a Reason, you can cross the finish line.

For more information on how to RuNFor a Reason in NYC, please e-mail Molly at (Enable Javascript to see the email address).

Weekend Pacesetter (Aug. 20-22, 2010)

CHASE
…down the cure! Join the Schmutzler’s in Carmel, Ind., for a 5K run/walk to benefit the Children’s Tumor Foundation. Chasing Down the Cure will start at 8:30 a.m. on Saturday, Aug. 21, 2010 at Northview Church (5535 E. 131st St.). All funds raised will be donated directly to the Foundation.

FYI: As an MD and PhD student, researcher and husband, Brian Schmutzler stays busy. In 2008 he found the time to create Chasing Down the Cure, a 5K Run/Walk to raise money for NF research. Nearly 100 participants ran the course designed especially for the Northview church property. Donated prizes helped acknowledge winners in overall and age and gender categories. However, the main focus Schmutzler said was on NF: patients, treatments and research. The event has brought together patients, healthcare professionals, family and friends through fundraising, running, and generating awareness. Scmutzler is also a recipient of the Foundation funded Young Investigator Awards, which enable young scientists to study and contribute to NF research.

HURRY
It’s not too late to run in one of the most premier races of running — the ING NYC Marathon. Join a team that raised almost $200,000 for research in 2009. For more information on how to get a slot, visit nfendurance.org/nyc or e-mail Molly at (Enable Javascript to see the email address). Hurry, these slots are going fast!

SIGN UP
Get accurate information on NF1, NF2 and Schwannomatosis by signing up on CTF’s website. Click here for five reasons why.

ANNA’S WEEKEND TOP 10
It’s hard to do: staying healthy on weekends as daily routines get shifted. Whether it’s a social gathering or a busy day of sports schedules and errands, here are some tips to keep your healthy nutrition choices in balance. Anna’s best advice? Cheat a little, but not a lot.

1.Snack on a big plate of veggies before going to a party or dinner.
This will fill you up on the good stuff; then you’re not as hungry at dinner.
2. Drink two glasses of water before dinner.
You will feel less hungry if you are properly hydrated.
3.Take a smaller portion than normal.
When making a plate of food, this tip can help eating too much. Have seconds if you’re still hungry. Plus, this will encourage you to eat more slowly.
4. Drink a glass of water between each glass of wine or cocktail.
This makes you less hungry and you will drink less calories too.
5. Limit your sweets to one, no one of everything.
If your craving the sweets, have just one of your favorites and eat slowly, enjoying it completely. If possible, eat half of it and save the other half for later.Your sweet tooth can get another taste later.
6. Fill half your plate with veggies.
When making a plate for dinner eat mostly the healthy foods (veggies, fruit, salad, etc.) and the other half with a mix of your carbs and protein.
7. Eat slowly!
It takes about 15 minutes after you eat that your body feels the fullness completely. Eating slowly allows the body to feel its fullness before you’ve eaten too much.
8. Wait for at least 15 minutes before having seconds.
Most likely you will feel too full by then.
9.  Stand and Mingle (or take a walk).
This helps digestion tremendously and will help burn off calories from dinner.
10. 15 minutes of workout for every piece of pie.
Before taking a cookie, piece of chocolate, piece of pie, candy, or any sweet, make a deal with yourself…. commit to 15 minutes of cardio exercise that next day!

Family Puts the FUN in Fundraisng with Kids Carnival

A.J. Perfetti wanted to do something to help his little sister. At age 11, A.J. couldn’t take away Julia’s MRIs, doctor appointments, or make her NF go away, but he could help her have fun and play with her friends. He asked his parents, Laura and Anthony, if he could help create a fair, a carnival, a party for kids.

They could not help but to say yes.

“You know how out of control NF feels, and he loved helping at our dinner auction, but he wanted to do something himself,” said Laura.

A.J. got right to work with his dad, Anthony. They built a lot of the games and used a ladybug theme in honor of Julia, affectionately nicknamed “Ladybug.”  The Perfetti’s included carnival classics such as a dunk tank and good eats: cotton candy, popcorn, hamburgers, hot dogs, icecream. Representatives from the New York Islanders hockey team brought a bounce house, a slap shot, and vouchers for future games. In addition, there was a DJ, face painting, tie-dye station, raffles and pony rides. Ed Huether, an adult living with NF from Long Island, N.Y., blew up animal balloons for the kids all day, including one just for Julia — in the shape of a ladybug.

This year’s event on July 17th marked the second Carnival for NF in Glen Cove. A.J. spent the majority of the day in the dunk tank and Julia worked the potty toss — a game where one throws a roll of toilet paper into a toilet seat. All of A.J.’s friends came and worked the  games for the smaller children. They handed out prizes and even helped clean up.

To make the carnival just a touch educational, the Perfetti’s placed signs at every game station with one fact about NF. “The more educated people are, the easier I can make the path Julia is on. I think understanding NF is so important for our community as she’s growing up. I think it helps people understand her and her life and her behavior better.”

“More important than the $5,000 raised at the event,” said Laura, “was the feeling it gave A.J., Julia and their friends–they can do something to help others even at a young age.”

One of the most memorable moments  for the Perfetti’s was seeing the carnival participants wearing the tie-dyed Team Ladybug shirts around town. “All my kids get so excited to see them walking down the street or in the ice cream place or wherever, ” said Laura. “It makes me teary, but they get so happy.”

To learn more about Team Julia Ladybug, click here.